Our Recent Craziness

Here is what has been going on in our house lately. I haven't blogged in awhile because it seems like one thing after another just piled on our plate without a break. We are surviving it though and as I think about all that happens during my day or over this past week, it is probably good that all of these things happen so that I do not get complacent. So that I stay on my toes in order to be ready for anything and not let it catch me by surprise. Because I am learning I do a lot better when I am mentally prepared and aware for something, or when I know that there is a chance that something could happen. Heavenly Father knows me so well and is prepping me so I can manage taking care of our precious Burke.

Here is a look into our lives at this time. Burke has a feeding tube in his nose that goes into his stomach also known as a NG tube. He gets fed through the NG tube every 3 hours during the day for a total of five feedings a day. The way I feed him is by a feeding pump which looks like an IV stand and you might have seen it in one of the previous posts where Burke pulled it over during the night. The feedings last 45 min. and he recieves about 4 oz. over those 45 min.. Then on top of that Burke gets fed on a contiuous feed all night long. He gets about 1 oz every hour for 10 hours. Let me tell you that the feeding pump alone is a full time job in and of itself. Not to mention that I have to check the NG tube placement everytime I go to feed him or give him his medications. I have to check placement by drawing back some of the fluid from the stomach to make sure it is in the correct spot and that is hasn't moved. Sometimes the tube gets stuck to the wall of his stomach and I can't pull any fluid back. I have to then try and push a couple of cc's of water to check if it is clotted or if it is in the wrong spot. We also were taught when he was first born (because he came home with a feeding tube then too) to check placement by pushing a few cc's of air into his stomach and listen for a swooshing sound and that tells us that it is in the stomach. I do that if I can't draw any fluid back but it is not a routine way to check placement anymore. These details seems to maybe not make sense to some people which is COMPLETELY understandable, and may also seem boring and lengthy to others. Again, understandable. But, I write this to describe what I have to do in order to take care of Burke. I am not writing this to complain, I just need to get this out, so I can get it out of my system and move onto with my day, onto another feeding. Or wait, I guess I have about 2 hours and 15 minutes until I have to start another feeding, because I just got back downstairs from stopping one of Burke's daily feeds. And I have finally become good enough as to not wake up Burke if he is sleeping. He I think is now used to the beeping enough to just sleep through that when I turn off the feeding pump.

So, last week I was worried that the feeding tube was in the wrong place and I could not for the life of me draw back any fluid. So, I had to call David, Ty's brother who is an ER doctor and who happens to live right around the corner from us. I knew this wasn't an emergency, but since he was due for a feeding, I had to get it checked out it see if it was in the right spot. Thanks David for checking it that day, and thanks to magical worker David, Burke's tube drew back fluid on David's first try! Yeah, I had just checked it before leaving the house, and Ty had just gotten home for lunch and he tried too. Anyways, that's how it always goes when you get something checked out, and when the doctor or nurse checks it everything is fine. We had a good laugh over it though.

Okay, so Burke had a great afternoon nap that same day and low and behold when I go and get him from his bed that blessed NG tube was pulled out of his nose. It was still taped to his face, but the part that is supposed to be in his stomach, was now outside of his stomach. On top of knowing that I had to be the one to put it back in, the tube had leaked all over his bed dripping stomach fluid mixed with formula! Yum, throw up smell everywhere.

So, after cleaning up his bed and him, I had to deal with the fact that I had to put it back in. I was taught to put the tube in when Burke was a newborn. And when Burke was in the hospital just two weeks ago, I tried to put it in then because it got pulled out during his swallow study. I tried, and I failed. I tried, and Burke turned blue, purple, and every bad color pointing to the fact that the NG tube probably went down the wrong tube and was obstructing his airways. Not good. And the nurses just stood there and hardly did a thing, while I was freaking out debating on weather or not to take it out. "Should I take it out? He doesn't look right to me. He can't breathe, what should I do?" I said in a total panic while the nurses just held him down and didn't say anything like they had gone mute. So, I quickly took it out and comforted my poor child. So, I told the two nurses that whom ever is the quickest at putting in tubes should put this one in. Of course, the senior nurse tells the junior man nurse (I usually don't have anything against male nurses, because I have LOVED our male nurses down in Utah, but this one-enough said) that he should be the one to do it. OKay, I knew that she was trying to teach him, but come on, don't have some one train on a heart baby who has oxygen for a reason- he already isn't getting enough on his own people. Don't put him through more trauma than his has to. Anyways, he couldn't get it in and told the other nurse to do it and she got it in on the first try and everything was fine after Burke took a little while to recover from that traumatic experience. Okay, so long story, I tried that time, but did not suceed, and I knew I had to do it again, but this time suceed. So, Ty was supposed to come home and help me hold Burke down while I put the NG tube in, but he had to stay at work late, so I chose to do it on my own. The hospital told us to come in to have them put it back in, but there is a reason why Primary's specifically taught me before I left the hospital, so that I could put it in in this situation.

Anyways, I tried and he turned blue again. It was awful and terrible he couldn't breathe and was choking. I regained my strength and knew that I could do it, so I tried one last time, and I did it! Yep, that is right, I put in an NG tube folks. I need to remember to put that on my resume. I was so proud of myself for what I had done. I taped it to his face and though it was not as nearly as good as Tyler's tape job from the week before, but it was a fine tap job and that was that. I had our good friend Angie who is a nurse come over and check the placement just to be sure, and she said that it was in. The only true way to tell if it is in is to do an x-ray, but since we were getting fluid from the stomach, it was most likely in. (And there was NO way I was going to the hospital again just for that).

And I do all of this, and a ton more all because of this little kid.

I was going to write more, but I think I will let you all have a breather, (breathe now) and I'll write more about what else I do during the day/night another day. But before you go, here are some more reasons I am doing what I do, and keep doing what I do everyday.